I thank the committee for the amount of work that it has done so far, and for its interest. Members have been thorough and interested, and they have understood the issues, which is more than can be said for some people in the medical profession. You have done a pile of work, but unfortunately we have not as yet had better outcomes for patients or any money saved for the NHS. That is where I am starting from.
We have Lorraine Cleaver’s letter, which will be useful in guiding the committee in what it should request from the Scottish intercollegiate guidelines network. The SIGN guidelines might be helpful, but they could take up to two or three years to emerge, and there are other areas that still need to be addressed. I propose that the committee keeps taking an interest, not only because SIGN might have to liaise with you, given that you are asking it to carry out the work, but because you have not yet had any feedback from the Scottish Government’s work on patient experiences.
If members do not mind bearing with me for a minute or two, I will just go over why you should keep the petition open, as I suspect that you might be considering closing it. First, there are outstanding issues. We know that more research is required on the condition and on what other options there are for patients. The lack of research in areas such as triiodothyronine—T3—prevents medical professionals from prescribing medication that could improve the lives of their patients. We need a programme of trials for T3 and for desiccated thyroid hormone. Patient experiences should be included in those trials, so that we listen to the patients and do not just look at test results, which is really important.
As the committee knows, there is still only a sole supplier of T3 in the UK, which means that there is a monopoly. There are current issues, again, with the supply of T3, according to the chemist who I spoke to last week.
We also know about misdiagnosis from the committee’s work. You will know that misdiagnosis has an impact on the patient and on the NHS as a whole. Patients are often misdiagnosed with conditions such as depression, myalgic encephalitis and Addison’s disease—the list goes on. Members can see that from the stories that you have received from 50 patients.
As Lorraine Cleaver’s letter to the committee notes, the Royal College of Physicians says in its policy statement:
“We recommend that those patients whose thyroid blood tests are within the reference ranges but who have continuing symptoms, whether on Levothyroxine or not, should be further investigated for non-thyroid cause of the symptoms.”
That is increasingly worrying, because, as members know, that is what happened to me. Over several years, the NHS spent thousands of pounds putting me on heart monitors and giving me brain scans, and on hospital admissions and prescriptions for this, that and the other, including for a low immune system. The cost to the public purse of that approach is huge and leaves people on medication that they do not need and that does not help them.
There is the specific issue of ME, where people are economically inactive and are living a half life, or no life at all. That is something in which the committee could take an interest.
There are 87 medicines for type 2 diabetes, 47 medicines for depression, 45 medicines for acne, 16 medicines for athlete’s foot and just one for underactive thyroid, which is an immense condition, as the committee will know from all its work.
We know that people are resorting to sourcing T3 and pig thyroid from abroad. That is allowed under the Medicines Act 1968, but there is no regulation of what people are taking and no knowing what is in the medicines. People should not have to go to such lengths, but they are doing it, because they feel as if they are rising from the dead.
Many doctors are concerned about the guidance from the Royal College of Physicians, which really only helps people who convert normally. People who do not convert are a real problem, as the committee is aware. It is fair to say that endocrinologists are scared to push the boat out and try other things. They are worried about the stricture to do no harm, but they are actually doing harm by not trying other things that might bring people back to life.
The correct testing is out there, but it is not available on the NHS a lot of the time. People are paying to get the correct tests and to get on the right medicines, if they can afford it. Others who cannot afford to pay are left to languish. There is also the issue of telling patients that they are borderline, which is a scandal. People could be trying thyroxine—T4—in those situations.
The Healthcare Improvement Scotland scoping report that the committee received recently is telling. It found that the use of thyroid function tests is based on generally poor-quality non-peer-reviewed evidence. If a doctor carries out a test, it is usually only for thyroid stimulating hormone—TSH—and occasionally for T4, but the evidence for the adequacy of those tests is weak. At a Thyroid UK conference in October, Dr John Midgley said:
“There have been long, sad and unsatisfactory developments in thyroid function testing, including up to the present day”.
He says a lot more than that and I am happy to share his report with the committee.
It has been admitted that 15 per cent of diagnosed sufferers do not do well, but we think that the figure is likely to be higher than that. It could be considered medical negligence not to treat those people properly. Even those sufferers who supposedly do well on T4 are still obese—we have a huge obesity problem. They also have thinning hair, dry skin and are tired.
It is estimated that only 20 per cent of people who are diagnosed are referred to endocrinologists. More people need to be referred. I have heard of several women recently who have had strokes that could have been caused by their underactive thyroid. They are not doing well and are suffering from ME-type symptoms, but they have not been referred to an endocrinologist by their GP. That is just not right for people with a complex condition such as an underactive thyroid.
Thank you for bearing with me, convener, but there are many issues to cover, including research, testing, medication and the supply of medication. I do not think that SIGN guidelines would address all those points, although they would help. An inquiry by the Public Petitions Committee would be helpful and welcome. There are so many areas to cover. The committee is still waiting for the patient experience feedback from the Scottish Government. There is a new public health minister, so it might be helpful to pass all the information to her and ask her to address the committee on the issue. The committee has done such a power of work and now is not the time to stop.
Thousands of women are desperate for help. It is specifically a women’s issue, so another line that the committee could take is to ask the Equal Opportunities Committee to look into the matter from the perspective of discrimination against women and report back. The bottom line is, if the committee stops now, it will have wasted the time that it spent doing the work that it has already done. That work has been fantastic, but we need to change the outcomes for women and save the NHS thousands of pounds. The committee has the ability to do further work to enable that to happen.